employed, and contextual influences
2.4.1 Processes used
The active involvement, participation and engagement of consumers and community members is often achieved using a very broad range of processes and methods. The various methods used are often conceptualised as ladders, including those of Arnstein and Hart as discussed in Section 2.3 above (Arnstein, 1969; Hart, 1991), or more recently as spectrums of involvement, such as the IAP2 spectrum (International Association for Public Participation, 2014). Spectrums, such as IAP2, are a similar way to express the idea that participation, engagement and involvement can vary, and that the stages or rungs on a ladder are not necessarily discrete levels. As these
conceptualisations convey, methods used range from those which are about informing, to those which involve collaboration with, and empowerment of, consumers. These methods can employ both formal and informal processes (McDonagh & Bateman, 2012). A review of the literature indicates that different groups have been taken part in involvement processes in different ways which have been described using a variety of names and terms (Domecq et al., 2014).
A summary of the most common processes used, and a critique of some of the benefits and limitations of them and where they sit on the IAP2 spectrum is shown in Table 2.2. A brief review of each of these processes, and examples of where they have been used, follows the Table.
Table 2.2 Key features of common involvement processes
Process Key features IAP2 level(s) Benefits Limitations Participatory
design
Iterative cycles between stakeholders, typically using workshops Consult, involve, collaborate Easily understood by researchers and young people; less resource intensive because of focus on workshops
Does not lend itself to the empower level of IAP2; can be limited in the type of involvement; more suited to some forms of research (e.g. design focused research) than other types Participatory action research
Involvement throughout the research process,
sometimes continuing after the research project has been completed Collaborate, empower Very in-depth form of involvement; emphasis on reflection phase, which allows stakeholder groups to learn from the experience Resource intensive; requires researchers to have extensive links with community groups; may not be suited to non- community based research Co-design processes Creation of equal relationships between different stakeholder groups
All phases, depending on specific execution Flexible, can be tailored to specific project needs or skills; may empower consumers through treating them as ‘experts’ Can be used in such a variety of ways that the specific term can be meaningless; lack of
perceptiveness can mean that involvement is tokenistic Co-
researchers
Consumers involved as researchers who have equal status with other
researchers Collaborate, empower Genuine involvement as equals; consumers’ expertise formally legitimatised Requires training and availability of consumers; may result in some consumers not being able to be involved because of education and availability requirements; not
necessarily suited to all ages or ability levels of consumers (e.g. young people and disabled people) Researcher- led
Consumers are guided by researchers in specific ways or at specific stages Inform, consult, involve Less resource intensive than other methods; simpler because it is less of a departure from traditional practices Consumers less actively involved; consumers may not feel as if their opinions have been as actively considered as with other methods Consumer- or community- led Consumers or community members lead the research, non-consumer researchers support Collaborate, empower Consumers lead the process; topics and processes are determined by consumers; empowers consumers to learn research skills Requires consumers to have, or develop, research skills; has limited relevance to young people because of the high skill requirement
Participatory Design is a research method which is used in studies which aim to produce an intervention or product. It is underpinned by consumerist principles that emphasise the usability, effectiveness, and acceptability of the product that is being developed (Elf, Rystedt, Lundin, & Krevers, 2012; Orlowski et al., 2015). Interventions or products are developed by working in iterative cycles to build on each of the
stakeholder’s knowledge and understanding to develop and refine the product (Orlowski et al., 2015). The method has been used in a wide range of fields, such as mental health and human-computer interactions (Elf et al., 2012; Orlowski et al., 2015; Spinuzzi, 2005). As described in detail in Section 2.6, Wadley, Lederman, Gleeson and Alvarez- Jimenez (2013) used participatory design methods to develop an online therapy for young psychosis suffers. One of the specific mechanisms they used was a workshop in which young people were presented with preliminary sketches of the intervention website and asked to comment on these.
Participatory Action Research (PAR), or Community-Based Participatory Research (S. Chen, Poland, & Skinner, 2007), is undertaken to empower consumer and community members by shifting authority and power away from the researchers who are conducting the research (Chambers, Pringle, & Juliano-Bult, 2012; S. Chen et al., 2007; Orlowski et al., 2015). It achieves this by involving stakeholders in a meaningful, in-depth, and sustained way throughout the research process. This involvement can take place at any stage of the process, from research design to implementation. This process is designed to ensure that the results of the research are suitable for use by consumers and community members, and that they are committed to using it (Dold & Chapman, 2011). As a result, projects which use it may be more likely to have their results or findings translated into community practices and policies (Chambers et al., 2012). Chen, Poland and Skinner (2007) used participatory action research to involve adolescents as co-evaluators of an applied research program called TeenNet. The following six-phase model was used: (1) involvement of a group of young people; (2) identification of issues by the young people; (3) planning of community action by the researchers and young people; (4) action; (5) research, reflection and reward in which communities took part in a participatory evaluation of their action projects and the overall process; and, (6) sustainability, which involved the ongoing efforts to continue identifying and
addressing community concerns.
Co-design processes aim to create an equal relationship between a range of different stakeholder groups. Co-design processes have a strong focus on respecting the views of all stakeholders, and using their views to improve or create solutions that are fit for purpose and based on self-expressed needs (Szebeko & Tan, 2010). However, they are extremely broad, and comparisons between methods can be difficult because of the range of techniques referred to as co-design. An example of one model of co-design is described by Szebeko and Tan (2010). Their model involves six stages: diagnose; engage and discover; design; develop and test; influence, delivery and enterprise; and measure and sustain. This model enables designers to work throughout a project with clients and other stakeholders.
Co-design processes may involve young people designing parts of the research process, or facilitating data collection activities, such as running focus groups or conducting interviews (Hagen et al., 2012; Mawn, Welsh, Kirkpatrick, Webster, & Stain, 2015; Monshat, Vella-Brodrick, Burns, & Herrman, 2012; Smith et al., 2014; Wadley et al., 2013). Other terms used to describe this process, or parts thereof, include
co-design interviews (Monshat et al., 2012), co-design workshops (Robinson et al., 2014), and co-facilitating groups (Graham, Rose, Murray, Ashworth, & Tylee, 2014).
Where consumers are involved as researchers who have equal status to other researchers, they are referred to as co-researchers (McDonagh & Bateman, 2012). More commonly, young people are involved at isolated stages of the research process.
Examples of this include project and research agenda development, such as for research on high-risk youth (Iwasaki, Springett, Dashora, McLaughlin, & McHugh, 2014; McDonagh & Bateman, 2012); and the dissemination and presentation of the research findings to a wide range of audiences (Fleming, 2010; McDonagh & Bateman, 2012), including at conferences (Crowe, 2007). Consumers have been involved in mental health service delivery in a broad range of ways: the design of mental health services, staff selection, and creating awareness of the problems and challenges of mental ill health (Ramey & Rose-Krasnor, 2015; Skinner & Fleming, 2007).
Researcher-led involvement processes are also utilised. These processes involve consumers being guided by researchers in specific ways, or at specific research stages. Examples of stages at which consumers have been involved include conducting data analysis (Sweeney, Greenwood, Williams, Wykes, & Rose, 2013), undertaking systematic reviews (Morley et al., 2016), and identifying research priorities (Banfield, Barney, Griffiths, & Christensen, 2014). Research which has created a new mental health treatment, or evaluated an existing one, has involved consumers in the testing process to ensure that the intervention is appropriate for the target audience (Hagen et al., 2012; Orlowski et al., 2015). Consumers have also assisted by recruiting research participants via their social networks in order to disseminate an awareness of the project to other young people (Smith et al., 2014).
Research can also be consumer- or community-led (Boote, Telford, & Cooper, 2002). Consumer-led research allows consumers to have greater control over the topic and design of the research than the above processes allow for. Examples of this include university departments led, or co-led, by consumers including the Service User
Research Enterprise (SURE) at King’s College London; and various consumer-led research networks (e.g., the Consumer Led Research Network in New South Wales, Australia). While this form of consumer research is growing in prominence, it has limited relevance to young people who do not usually have the skills and experience to take a leading role.
2.4.2 Governance structures
Advisory groups are one of the most frequently employed methods of involving consumers and community members in both research and service delivery (Gyamfi, Keens-Douglas, & Medin, 2007). For example, children and young people’s
involvement in publicly funded research in the UK has been largely facilitated through an advisory group, GenerationR, which is made up of local youth advisory groups from across the UK (Brady & Preston, 2017). Advisory groups enable researchers to consult young people throughout the research process, from the design stage through to
evaluation and implementation (Howe, Batchelor, & Bochynska, 2011). The format and function employed varies depending on the nature of the research being conducted, the organisational structures that exist to support young people’s participation, and the characteristics of the young people involved. For example, Mawn’s use of the advisory group model involved meetings between the young people, clinicians and academics to discuss their differing ideas of what research should be prioritised (Mawn, Welsh, Stain, et al., 2015). Advisory groups provide a platform for group members to advise
researchers about a topic of interest through a regular and formalised consultation process. These groups may be comprised solely of consumers and community members, or consumers and community members may provide advice alongside other experts (Monson & Thurley, 2011).
2.4.3 Contextual influences
In addition to the benefits outlined above, there are a broad range of contextual factors which impact on all stakeholder groups when involvement is used. The
following section reviews the key influences on how involvement in research and health service development is practiced. As noted by Kirby (2004), many of the issues relevant to actively involving young people in research are similar to those for actively involving people in research in general.
One of the primary rationales given for consumer and community involvement is to address power imbalances in research and health service delivery. Through
choosing to be involved, consumers can, reduce this power imbalance (Cargo & Mercer, 2008; Kirby, 2004; Lolacano Merves, Rodgerds, Johnson Silver, Sclafane, & Bauman, 2015; McDonagh & Bateman, 2012; Monson & Thurley, 2011; Shaw et al., 2011). A review of four youth involvement case studies suggested that researchers need to adapt their behaviours and structures to address this power imbalance and enable young people’s voices to be heard (Powers and Tiffany, 2006).
Involvement requires structural and behavioural alterations to the research process including time, flexibility and resources. The time required to implement involvement processes often exceeds that accounted for during the planning stages of a research project (Coser et al., 2014). However, if a commitment to involvement is not maintained throughout the research process, this may lead to resentment,
disappointment and a sense of failure among participants (Coser et al., 2014). Involvement also requires organisations or researchers to be flexible in the allocation of resources and to be prepared to adapt to account for the changing needs of those they are involving (Monson & Thurley, 2011; Ramey & Rose-Krasnor, 2015). Where this flexibility can be achieved, it includes aspects such as providing space and time for young people to learn new processes (Powers & Tiffany, 2006); and
contributes to the creation and maintenance of positive research environments, which are discussed further below (Fleming, 2010).
A number of organisational changes may be required to enable involvement to be effective. These include changes to how resourcing is conducted and allocated. Researchers and service providers have identified that involving young people in research and mental health service delivery is resource intensive (James, 2007; Ramey & Rose-Krasnor, 2015). The implications of not adequately resourcing the practice were discussed by James (2007) in his review of four case studies of consumer involvement in Australian mental health service delivery. These implications included the need to maximise consumer’s contribution and avoid poor experiences. In addition, researchers have reported that the lack of adequate resources is a major barrier to involving both adults and young people (Chambers et al., 2012; Dold & Chapman, 2011; Hagen et al., 2012; Howe et al., 2011; Orlowski et al., 2015; Owens et al., 2010). This challenge has been identified in the broader adult involvement literature (Ocloo & Matthews, 2016), and by young people specifically as issue requiring consideration (National Children’s Bureau, 2010). In allocating resources, such as additional researchers or administrative and support staff, care needs to be taken in planning how consumers interact with the team. Howe et. al., (2011) provide an example of a lack of clarity over who was the primary point of contact and support person for the youth involved by one research team. Such misunderstandings and disagreements within a research team can confound the pragmatic considerations, and lead to the perception of being ignored, which detracts from the effectiveness and experience of involvement (Hagen et al., 2012; Howe et al., 2011).
The challenge of structural and behavioural alterations is particularly
pronounced in youth involvement in mental health research. Researchers have reported difficulty in recruiting and retaining young people with mental illnesses (Monshat et al., 2012; Orlowski et al., 2015). Owens et al., (2010) found that fluctuations in mental state and personal circumstances made retention of the same group of young people
throughout the research process difficult. Both Monshat et al., (2012) and Orlowski et al., (2015) have raised the ethical challenges of working with young people with a mental illness. One way in which these challenges have been addressed is to involve consumers who are at a point in their recovery such that they can understand the project and effectively complete the tasks expected of them (Case et al., 2014).
Young people who are involved in research and service delivery have several expectations of the researchers and health professionals who involve them. They expect that their contributions will be heard with sincerity, will be acted upon in ways that are discernible to them and will be credited to them by the researcher (Hagen et al., 2012; National Children’s Bureau, 2010). Researcher behaviour, and the processes they put in place, can influence how young people perceive these expectations to be met or not; failure to meet expectations can discourage young people from involvement. The most consistently perceived negative behaviour reported is researchers ignoring the
contributions of young people (Dold & Chapman, 2011; Elf et al., 2012; Powers & Tiffany, 2006). Young people have also reported a lack of interest, insincerity and tokenism when interacting with some researchers (Collin, Rahilly, et al., 2011). In Collin, Rahilly et. al.,’s (2011) study of youth participation in the Australian online mental health service, Reachout.com, these negative experiences were documented with only some of the organisation’s staff, yet resulted in decreased feelings of
connectedness to the community and the organisation as a whole. Such undermined relationships reduce the perceived efficacy of young people’s involvement, and can lead to frustration, disillusionment, disempowerment and a sense of isolation (Collin,
Rahilly, et al., 2011).
Researchers’ and health professionals’ biases may be due to perceived underlying feelings of insincerity and a lack of interest. Consumers have identified researchers discounting their input as insufficiently academic in nature as a challenge to their involvement (Patterson, Trite, & Weaver, 2014). Similarly, researchers may underestimate the capabilities of young people, for example by failing to recognise their potential for leadership (S. Chen et al., 2007). This may be due to negative attitudes, and resistance to change among health professionals and managers (Ocloo & Matthews,
2016). In particular, researchers’ negative attitudes toward young people with mental illnesses has been reported previously (Hickie et al., 2005; Orlowski et al., 2015)..
However, the perception of lack of interest may be due to the necessities of research and service delivery. There is a need to balance the perspectives of young people with those of other stakeholders, pragmatic allocation of resources and the technical and ethical requirements of research (Monshat et al., 2012; Orlowski et al., 2015). For example, Monshat et al., (2012) reported that the young people they involved in co-designing an online mindfulness program suggested recruitment material design elements that were not considered ethically sound, and hence these changes were not implemented.
Where young people have poor perceptions of researchers and health professionals, these may be alleviated by ensuring clear communication, clear expectations and maintaining positive relationships and environments.
Miscommunication can be avoided, and perceived value increased, where researchers ensure young people are aware of the project and the expectations of their role are clearly defined (Hagen et al., 2012; National Children’s Bureau, 2010). Kirby (2004) recommends that this communication include informing young people of how their contribution is to be used and how the research will be disseminated. Young people may be provided with summaries of the research in accessible forms and language,
preferably including detail on how the outputs of the research have improved the lives of young people (Kirby, 2004).
Good relationships and research environments support involvement processes. Important relationships include not only those between researchers and young people, but also within groups of young people (Ramey & Rose-Krasnor, 2015). Appropriate resourcing (see above) to support consumers and community members can provide a positive environment (Monson & Thurley, 2011; Powers & Tiffany, 2006), and may involve having a dedicated support person (Kirby, 2004). A supportive environment can be assisted by researchers acknowledging the capabilities of young people they involve, and that these capabilities can vary between and within groups of young people (James, 2007; Lolacano Merves et al., 2015). Once these capabilities are understood, the setting of realistic expectations can contribute to a positive environment (James, 2007). Finally, by fostering relationships and an environment that makes research engaging and
enjoyable ensures participants’ experiences are positive, thus increasing their motivation and building cohesion (Kirby, 2004).
2.4.4 Diversity in involvement
Ensuring that the population of consumers who are involved in research and service delivery are diverse, and that the opportunities to be involved are inclusive, is a key issue with involvement. Within adult involvement in health research, the need to include the perspectives of a wide range of people and groups has been identified as being important by organisations including INVOLVE UK (Simons, 2012), and by